Re: Anyone on or ever used colchicine

[Guest guest]

Hi ,

My son, at 18 mos was prescribed it. I never filled it after reading some forums

of adults complaining that is made them feel terrible. Have you read what

others online have said? Many adults take themselves off of it due to terrible

side effects and since my little guy could not articulate his feelings to me

clearly I was not comfortable with this form of symptom management. We also

skipped it because of the routine blood and urine work that is required to make

sure their organs were handling it. I just though 18mos was too young to be

taking such a powerful drug.

On the other side, if your child has FMF (even clinical FMF) colchicine can be a

lifesaver, no exaggeration. I noticed that drs are prescribing this more and

more for , according to our immunologist if colchicine had worked on my

son, he would have been diagnosed with clinical FMF even though he genetically

tested out of this. I believe some people have had success with it. I used to

read the FMF group and the colchicine is talked about very often on that

group. Many of those people suffering from FMF could not live without it. The

good news is that colchicine has been around for many decades, so there is a lot

of info out there.

Mom2 2.5 yrs old

Fever free since T & A May 2008

[Guest guest]

hi there i sorry to say they took my son off colchicine today. he was on it

sense Nov of 2007, it stopped the fevers but nothing else. and then in Sept.

of last year he started getting a drop in his pulse which it went to as low as

36 beats a min during an episode, and now sense the end of dec. he has been

getting spine pain with an episode. the dr. just said that it may be a side

affect, but i was reading that it may be colchicine poisoning, that will cause

a slow heart beat and other things. she said that the fevers will come back

and to treat with the prednisone, one step forward and three steps back. good

luck keep a pulse record every once in while during an episode. char

[Guest guest]

hi there i sorry to say they took my son off colchicine today. he was on it

sense Nov of 2007, it stopped the fevers but nothing else. and then in Sept.

of last year he started getting a drop in his pulse which it went to as low as

36 beats a min during an episode, and now sense the end of dec. he has been

getting spine pain with an episode. the dr. just said that it may be a side

affect, but i was reading that it may be colchicine poisoning, that will cause

a slow heart beat and other things. she said that the fevers will come back

and to treat with the prednisone, one step forward and three steps back. good

luck keep a pulse record every once in while during an episode. char

[Guest guest]

hi kelly my son started colchicine at the age of two and it did reduce his

fevers we then at the age of three got a ear nose and throat doctor to take out

his tonsils and has been fever free for a year we did that because did not want

our son being on the colchicine his whole life and felt the removal of tonsils

was wroth the chance. any question please write

emily

[Guest guest]

hi kelly my son started colchicine at the age of two and it did reduce his

fevers we then at the age of three got a ear nose and throat doctor to take out

his tonsils and has been fever free for a year we did that because did not want

our son being on the colchicine his whole life and felt the removal of tonsils

was wroth the chance. any question please write

emily

[Guest guest]

Hi !

has been on colchicine since May of 2008. He had two light

rounds of fevers that summer, but we were also transitioning him from

the liquid form, which was no longer available, to the tablet. He

tested negative for FMF, but the colchicine has been a lifesaver. We

found out for certain that it does work, as he missed his first dose

on January 10th by 12 hours. His grandfather was passing away, and

my mother didn't have any medication on hand while watching him. We

thought he would be ok, but he started fevering on the night of the

11th. It lasted 8 days and was his worst episode since April 2008.

Yes, he does have to have bloodwork done every 3-4 months to check

out his liver enzymes, but that is worth it to keep him from having

such a miserable time. Since he's been on the medication, he has

gained considerable weight and height. He doesn't seem to have any

bad side effects, either. I also learned to keep an emergency supply

in my purse, in case this were to happen again.

, mom to (26 months old)

PS, we figured that taking a tablet and having blood drawn every once

in a while was a heck of a lot better than having him on Enbrel or

something similar, where he would have to get a shot about twice a

week. It's a lot cheaper as well!

[Guest guest]

-Hello . Thank you for your reply. So far we are 43 days

fever free, considering would fever about every 21 days. We

are keeping our fingers crossed that the days will keep on climbing.

Thanks for the advice about missing the dose. We had his

rheumatology appt today with blood work. Hopefully his blood work

will be great so we can continue the medicine. We will find out the

results in a few days. We have had no side effects, and my son has

also been growing, gaining weight, and seems to have a lot more

energy. I agree with trying to hold off on Enbrel. Not to mention

that Enbrel also lowers the immune system. I am glad to hear that

your son is doing well on the medicine, and can only hope my son will

have the same results. Thank you again.

[Guest guest]

Hi ,

My son Niko started fevering at 6 mos old every single month (he will

be 4 in June). He started colchicine in July 08 and has not had a

fever since - we see pediatriac rheumatologist every 6 mos for blood

work - she is excellent and is very knowledgeable about all of the

fever syndromes!! He does not have any side effects (he had diareah

for the first week or so but nothing after that). it has been a life

saver for us! Niko is a different kid without the fevers - he eats

like a champ and has grown like crazy (during the fevers he would not

eat).

Good luck on it and keep us posted!

[Guest guest]

Hi ,

My son Niko started fevering at 6 mos old every single month (he will

be 4 in June). He started colchicine in July 08 and has not had a

fever since - we see pediatriac rheumatologist every 6 mos for blood

work - she is excellent and is very knowledgeable about all of the

fever syndromes!! He does not have any side effects (he had diareah

for the first week or so but nothing after that). it has been a life

saver for us! Niko is a different kid without the fevers - he eats

like a champ and has grown like crazy (during the fevers he would not

eat).

Good luck on it and keep us posted!